What it’s like to have PCOS..

I’ve finally mustered the courage to embrace life with something to deal with for the rest of my life maybe. I don’t know until when but I’m quite certain that it’s not soon. Four years have swiftly passed since the day I was diagnosed with Polycystic ovary syndrome (PCOS). The discomfort I felt during the whole examination is one vivid memory that I’d tried to blot out. However, no matter how hard I tried it would just come to me like a wave at some point. I was 23 at the time and never did I imagine myself to be in that situation.

What made me decide to see a doctor? Did I feel something wrong with my body? I’d be lying if I said no. I’m laying all the cards on the table now. These were the things I experienced before the diagnosis.

Before having menstruation, my face had tiny and few pimples. This was when I was about 12.

At 13, the monthly visit began. Skin condition was having larger pimples.

It wasn’t long when I started having cramps during my period.

Next thing I knew was I was having irregular menstruation. About 2-3 months delayed and the pains in the lower part of my abdomen kicked off.

Then my skin started to be greasy. REALLY greasy.

These things continued until my university days.

But this time, the pains worsened. Like every period I felt like dying. There were sweating, vomiting, and losing appetite. I had to be absent from school everytime.

My body was never heavy, I was always lean except for my face that became a bit chubby when I learned drinking.

My breasts were not changing size wise.

Mood swings? YES!

My armpit hair were becoming thicker and darker.

My mom thought it was all puberty. So did I.

However, it didn’t stop until I graduated from university at 21. We thought it wasn’t puberty anymore.

Worst thing was I developed cystic acne and the pains were even more terrible. So terrible that I always had to call in sick.

Me in my early 20’s.

Tried to endure it until there was one time that I passed out from the pain even after taking some pain reliever.

The medicines and skin care I used didn’t seem to work. At 23, my mom talked me into consulting a specialist.

So that was it. Those were the symptoms. Of course I wasn’t happy upon hearing the result after the examination. I even thought I would die years later. If you must know, PCOS is currently incurable but the symptoms can be managed. It’s like feeling no pain and such but it’s still there inside you and may even cause complications. My doctor prescribed Althea which is an oral contraceptive pill to regulate my menstruation and possibly treat my acne. I took it for 3 years. Did it help? Somehow, yes. The things happened to me while taking Althea are as follows:

First few months, nothing changed except for the feeling of becoming better. Know what I mean?

It wasn’t until after 6 months that I noticed good things.

My skin started to become less oily.

And yes, the cystic acne dwindled.

Regular menstruation? Yes and no more pains!

Did I gain weight? Not really. Still underweight.

My breasts were still the same.

Underarm hair, still the same.

Just this thing that I don’t really like, I started experiencing hair fall. Not horrible though.

Mood swings? Still present but controllable.

No more losing appetite.

Just before moving to Japan, I went back to see my doctor for follow-up examination. I was surprised to hear her saying that the cysts didn’t progress in number nor in size. In fact, they oddly shrunk based on the ultrasound result. She even teased me to try having babies soon (I was a newlywed at the time.). On the other hand, if I go off the pill I might experience the symptoms again. With fear of so, I asked if I could take a different brand and was told yes. Why did I ask so? Because Althea isn’t available in Japan. As a matter of fact, birth control pills can’t be bought over the counter. Can’t deny that I was worried about it.

The husband managed to buy Diane from an online store based in Singapore. I was on it for over a year. Here’s what I experienced:

I had high expectation that it would do the same thing as Althea did to me, but gradually I had a few different experiences.

There were times I had shortness of breath which I never had before.

When I was about to have my period, I’d get constipated or the other way around.

I gained about 5 kg. But still below the average weight for my age and height.

Often times I couldn’t sleep at night but could take naps during the day.

No loss of libido but the opposite.

Here’s the thing, I felt depressed at some point. I couldn’t explain, but I suddenly felt that loneliness and sadness over nothing. My spouse thought it was due to homesickness, however it felt totally different for me. Like whenever I remembered something sad in my life, I’d break down. The sad memories would sometimes come crashing down on me out of the blue. Thank God I never thought about killing myself whatsoever. Despite feeling abandoned, emotional and so on, a little optimism would poke me. I’d turn to the good things that have happened to me and the people I love and know. That’s how I fought whatever I was feeling.

Occasionally, I’d get one or two cystic acne when I stopped using Orbis.

It’s been almost 2 months now that I’ve been off the pill. Next time I’ll be sharing about my condition not being on the pill. As a woman, I’m encouraging you to pay attention to anything that’s unnatural with your body. And to you who have PCOS, yes you beautiful, please don’t give up! I know it’s hard, but it is what it is. Let’s just be more positive! Okay, love? It’s gonna be alright. 🙂

Thanks for sharing your story! I’ve read a lot about this. I have endometriosis which is a little bit different but a little bit the same. I’ve had cysts that had to be removed. It’s been hard to conceive again.

I have PCOS too, in fact I had to go for surgery to remove my cysts which was too big, the cysts haven’t return so far, but my cramps are still terrible. Tried many birth control pills but many had undesirable side effects for me, tried TCM but it didn’t work, so I’m just counting on medication every time I have my period =( previously heard that evening primrose oil helps with regulating menses and easing the pain, but there has been incidences of it being linked to cancer, so I stopped taking it too. Still trying to find ways to ease the pain!

I have read this post with my heart growing heavier each moment. Life has been tough with you. You are brave to have lived through all this agony Sheryl. My prayers would always have you in my mind for easing your pain. Wishing you good health and happiness dear friend. Whenever you are sad, think of a friend who has good wishes for you and smile. 🙂 Thanks for sharing.

Don’t mention it. The goal is to raise awareness. 🙂 Aside from pills, PCOS patients are told to have healthy diet, do exercise especially if they are obese, and surgery which is temporary. The cysts might develop after a while.

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